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Tuesday, March 29, 2011

Latest and Greatest

We've spent the past few days at CHOP, our second home. I mean it's been almost 2 month since our last admission, it was about time we got ourselves back here for a visit, right?

Charlotte's doing well. This admission is more of a "complex care" admit than a sick admit, so its been less stressful than others in the past. What's complex about Charlotte? you might ask.

It's easier if I just give the week in review:

Sunday: Started having some nasal congestion. This is our first real cold (ie, runny nose, needed to be suctioned, etc) since October and the combined 2 week admit. Way to go us!

Monday: Sleep Study

Wednesday: Cold peaks. We're going to stay home through a cold! Woohoo!

Thursday: Cold gone, for the most part. We can still hear congestion, but we can't see it, and it hasn't "dropped" in to her lungs

Thursday night: GJ tube malfunction. {SIDENOTE: This GJ tube is such a shamble, it's almost an insult to the word shamble. It's a standard PEG tube with an NG tube threaded through it, and then TAPED together. Seriously, in this day and age of uber expensive medical technology, we're TAPING GJ tubes together? For reals?} We have to pull the GJ and since this whole J tube feeding thing was a trial and we don't feel like running down to the ER (GJ's must be placed in Interventional Radiology), we replace it with the good ol' Mic*Key button G-tube. This means food is going into Charlotte's belly for the first time in 3 weeks.

Friday: Charlotte starts coughing again, having more cold-like symptoms, but no runny nose. We find out she has severe obstructive sleep apnea and we might need surgery and/or CPAP. And we don't have a night nurse.

Friday night: Charlotte has a very hard time sleeping. Coughing and gagging, constant desaturations, she was not a happy baby.

Saturday: Very sleepy baby. Still with the cough, but no runny nose.

Sunday: Charlotte starts wheezing. Albuterol! Wheezes some more. Charlotte's running a fever (low grade, 100.7 F) With the combination of a change to Gastric Feedings, the cold, the sleep apnea, etc, our pediatrician and the Integrated Care Service Floor at CHOP both thought it would be best to come in and have a little tune up.

Since then: Charlotte's been on albuterol every 4 hours to control her cold/ cough. It doesn't appear as though she had a major aspiration, but she was definitely microaspirating with the G-feedings. Yay! ENT came by to see her and determined that they would rather NOT do the surgery, a conclusion with which we whole heartedly agree. We're sticking around this place until Charlotte can be fitted with a CPAP machine and mask. That should take a day or two, and then we'll be home with our little snoring baby.

The sleep study showed some irregularities in her EEG, but we spoke to neuro today and they said they wouldn't worry about it until she starts having seizures. Haha, sure why not? All joking aside, they did say that some irregularities are to be expected with a micropreemie and we shouldn't be concerned unless there were clinical signs. One more point for "preemie brain".

That's that.

1 comment:

  1. Oh my goodness Amanda! And Charlotte! You were writing me in the hospital while you were having a hard time with your poor baby at home, and now you are in the hospital!

    I'm happy that she is having a little tune up. I think I need a tune up. Wouldn't that be nice if we could be admitted for one?

    All joking aside, I'll be praying for your little Charlotte and I hope that that sweet baby can be home soon. Would you consider posting a picture in one of your next few posts, as I need a Charlotte fix.